Introduction
Autistic adolescentsFootnote 1 are at higher risk of mental health difficulties compared with their allistic peers (Bougeard et al., Reference Bougeard, Picarel-Blanchot, Schmid, Campbell and Buitelaar2021; Lai et al., Reference Lai, Kassee, Besney, Bonato, Hull, Mandy, Szatmari and Ameis2019; Micai et al., Reference Micai, Fatta, Gila, Caruso, Salvitti, Fulceri, Ciaramella, D’Amico, Del Giovane, Bertelli, Romano, Schünemann and Scattoni2023). Furthermore, autistic people are three to five times more likely to engage in suicidal and non-suicidal self-harming behaviours (Blanchard et al., Reference Blanchard, Chihuri, DiGuiseppi and Li2021; Geoffroy et al., Reference Geoffroy, Bouchard, Per, Khoury, Chartrand, Renaud, Turecki, Colman and Orri2022; Newell et al., Reference Newell, Phillips, Jones, Townsend, Richards and Cassidy2023; O’Halloran et al., Reference O’Halloran, Coey and Wilson2022), and they are seven times more likely to die by suicide (Hirvikoski et al., Reference Hirvikoski, Mittendorfer-Rutz, Boman, Larsson, Lichtenstein and Bölte2016). There are a number of factors associated with this higher risk, including interpersonal factors such as loneliness and unmet support needs (Cassidy et al., Reference Cassidy, Bradley, Shaw and Baron-Cohen2018; Hedley et al., Reference Hedley, Uljarević, Foley, Richdale and Trollor2018; Lipinski et al., Reference Lipinski, Boegl, Blanke, Suenkel and Dziobek2022) and intrapersonal factors including rumination, camouflaging burden, and emotion dysregulation (Arwert and Sizoo, Reference Arwert and Sizoo2020; Cassidy et al., Reference Cassidy, Bradley, Shaw and Baron-Cohen2018; Costa et al., Reference Costa, Loor and Steffgen2020; Richards et al., Reference Richards, Kenny, Griffiths, Allison, Mosse, Holt, O’Connor, Cassidy and Baron-Cohen2019). Many autistic individuals experience co-occurring alexithymia and have difficulties with emotion recognition (Milosavljevic et al., Reference Milosavljevic, Carter Leno, Simonoff, Baird, Pickles, Jones, Erskine, Charman and Happé2016). Difficulties with emotion regulation, as a key risk factor to mental health difficulties, are also higher in autistic adolescents compared with allistic groups (Conner et al., Reference Conner, White, Scahill and Mazefsky2020; Mazefsky and White, Reference Mazefsky and White2014; Restoy et al., Reference Restoy, Oriol-Escudé, Alonzo-Castillo, Magán-Maganto, Canal-Bedia, Díez-Villoria, Gisbert-Gustemps, Setién-Ramos, Martínez-Ramírez, Ramos-Quiroga and Lugo-Marín2024); autistic youth are four times more likely to have clinically elevated levels of emotion dysregulation (Conner et al., Reference Conner, White, Scahill and Mazefsky2020). Additionally, autistic adolescents may be more likely to rely on maladaptive regulation strategies (e.g. emotion suppression) compared with adaptive strategies (e.g. cognitive reappraisal; Samson et al., Reference Samson, Hardan, Podell, Phillips and Gross2015).
Emotion regulation difficulties are implicated in the development and maintenance of a wide variety of mental health difficulties, self-harm, and suicidal behaviours (Hu et al., Reference Hu, Zhang, Wang, Mistry, Ran and Wang2014; Kraiss et al., Reference Kraiss, Ten Klooster, Moskowitz and Bohlmeijer2020; Rogante et al., Reference Rogante, Cifrodelli, Sarubbi, Costanza, Erbuto, Berardelli and Pompili2024; Sloan et al., Reference Sloan, Hall, Moulding, Bryce, Mildred and Staiger2017; Weissman et al., Reference Weissman, Bitran, Miller, Schaefer, Sheridan and McLaughlin2019; Wolff et al., Reference Wolff, Thompson, Thomas, Nesi, Bettis, Ransford, Scopelliti, Frazier and Liu2019). Therefore, emotion regulation is considered a key transdiagnostic treatment target for many different mental health disorders across various intervention models (Gratz et al., Reference Gratz, Dixon-Gordon, Chapman and Tull2015; Gross, Reference Gross2015; Sloan et al., Reference Sloan, Hall, Moulding, Bryce, Mildred and Staiger2017). Given the elevated rates of difficulties with emotion regulation in autistic populations, and the role it may play in increasing self-harm and suicide risk, emotion regulation is considered an important focus for interventions seeking to improve outcomes for autistic populations (White et al., Reference White, Conner, Beck and Mazefsky2021).
Furthermore, it is important to acknowledge how environmental factors may further contribute to the development and maintenance of emotion dysregulation in autistic individuals. For example, the Biosocial Theory posits that emotion dysregulation arises from the interaction between one’s inherent emotion vulnerabilities and growing up in an emotionally invalidating environment (Linehan, Reference Linehan1993). For many autistic individuals, experiences of being socially excluded, misunderstood, bullied by others, and facing stigma associated with autism diagnosis may be common from a young age (Pearson et al., Reference Pearson, Rose and Rees2023; Pearson and Rose, Reference Pearson and Rose2023). Pervasive and persistent adverse social events from childhood to adulthood can lead to high levels of internalised stigma amongst autistic individuals with regard to their autism diagnosis and autistic identity (Cooper et al., Reference Cooper, Smith and Russell2017; Davies et al., Reference Davies, Cooper, Killick, Sam, Healy, Thompson, Mandy, Redmayne and Crane2023), which in turn contributes to high levels of camouflaging or masking where individuals try to hide their autistic traits in order to ‘fit in’ to society (Hull et al., Reference Hull, Petrides, Allison, Smith, Baron-Cohen, Lai and Mandy2017; Pearson et al., Reference Pearson, Rose and Rees2023; Pearson and Rose, Reference Pearson and Rose2023), much akin to self-invalidation (Bemmouna and Weiner, Reference Bemmouna and Weiner2023). The impact of negative autism identity and high levels of social camouflaging have both been linked to elevated levels of mental health difficulties amongst autistic individuals (Cooper et al., Reference Cooper, Russell, Lei and Smith2022; Hull et al., Reference Hull, Levy, Lai, Petrides, Baron-Cohen, Allison, Smith and Mandy2021). In light of intersectionality, women and girls, those with higher cognitive abilities, and ethnic minority groups are at particularly risk for diagnostic overshadowing, where difficulties experienced that may be accounted for by autistic traits are misattributed to mental health difficulties or other conditions, and result in under-diagnosis of autism in these groups (Gupta et al., Reference Gupta, Srinivasan and Gupta2025). Taken together, it is important to consider how environmental and self-invalidation may influence how autistic individuals make sense of their lived experiences, contribute to the development and maintenance of emotional dysregulation and mental health difficulties (Weiner et al., Reference Weiner, Bemmouna, Costache and Martz2025), and for such experiences to be acknowledged and discussed where appropriate to inform treatment delivery (Lei et al., Reference Lei, Cooper and Hollocks2024a).
Considering the high risk of self-harm and suicide, emotion regulation difficulties, and experiences of environmental invalidation in autistic populations, a report by the UK National Health Service (Murdoch et al., Reference Murdoch, Cahill and Worrall-Davies2023) suggested that the use of mental health in-patient and high-intensity services by autistic people had risen by over 50% between 2017 and 2023. Autistic people also experience barriers to accessing effective mental health support, including (but not limited to) lack of specialist training and resources that lead to low confidence and competence in clinicians in working with this group (Maddox et al., Reference Maddox, Crabbe, Beidas, Brookman-Frazee, Cannuscio, Miller, Nicolaidis and Mandell2020; Maddox and Gaus, Reference Maddox and Gaus2019; White et al., Reference White, Conner, Beck and Mazefsky2021), poor accommodations/adaptations to interventions, and longer waiting times (Camm-Crosbie et al., Reference Camm-Crosbie, Bradley, Shaw, Baron-Cohen and Cassidy2019; Cleary et al., Reference Cleary, West, McLean, Kornhaber and Hungerford2023; Dickson et al., Reference Dickson, Lind, Jobin, Kinnear, Lok and Brookman-Frazee2021; Tint and Weiss, Reference Tint and Weiss2018), all of which can exacerbate the risk of this population engaging in self-harm and suicidal behaviours whilst having poorer access to good quality care (Kato et al., Reference Kato, Mikami, Akama, Yamada, Maehara, Kimoto, Kimoto, Sato, Takahashi, Fukushima, Ichimura and Matsumoto2013). Studies have suggested that using reasonable accommodations such as the use of concrete and concise examples and instructions, fewer open-ended questions, use of visual aids, incorporation of focused interests and sensory sensitivity considerations (Huntjens et al., Reference Huntjens, Bosch, Sizoo, Kerkhof, Smit and van der Gaag2024; White et al., Reference White, Conner, Beck and Mazefsky2021), having generic clinical competencies, and having tailored content such as improving emotion awareness to reduce the potential impact of alexithymia on emotion dysregulation (White et al., Reference White, Conner, Beck and Mazefsky2021) can all improve quality of care provided to autistic individuals (Weiner et al., Reference Weiner, Bemmouna, Costache and Martz2025).
One particular evidence-based intervention for reducing emotion dysregulation, self-harm, and suicidal behaviours is dialectical behaviour therapy (DBT). DBT is considered a leading evidence-based cognitive behavioural intervention for improving these difficulties in young populations (Johnstone et al., Reference Johnstone, Marshall and McIntosh2021; Kothgassner et al., Reference Kothgassner, Goreis, Robinson, Huscsava, Schmahl and Plener2021; Mossini, Reference Mossini2024). DBT seeks to increase and generalise capabilities to regulate emotions and related areas of dysregulation utilising five modes of treatment: individual therapy sessions, group skills training, between-session telephone coaching, therapist consultation team meetings, and environmental interventions (Linehan, Reference Linehan1993; Miller et al., Reference Miller, Nathan and Wagner2010). DBT utilises a number of principles, including: zen-based practices, behaviourism, exposure, skills training, problem solving, dialectics, an underpinning biosocial model, and cognitive modification (Linehan, Reference Linehan1993). This principle-based structure allows for flexibility to tailor support to individual needs and allows for accommodations for minoritised groups (Camp, Reference Camp, Semlyen and Rohleder2023; Phillips et al., Reference Phillips, Parham, Hunt and Camp2024). This flexibility, alongside its focus on the transdiagnostic treatment target of emotion dysregulation, is thought to make DBT an ideal candidate for supporting autistic populations with emotion regulation and self-harm-related difficulties (Bemmouna and Weiner, Reference Bemmouna and Weiner2023; Huntjens et al., Reference Huntjens, Bosch, Sizoo, Kerkhof, Smit and van der Gaag2024). The biosocial model of how emotion dysregulation develops (Linehan, Reference Linehan1993) is thought to be applicable to autistic populations, such that environmental invalidation stems from early adverse experiences and invalidation from familial and societal systems, which result in internalised ableism and may increase social camouflaging and self-invalidation. These experiences potentially interact with emotional vulnerabilities that may stem from a biological vulnerability to emotion regulation as well as autism-related risk factors, such as social communication differences, sensory differences, and alexithymia, which further increases the risk of emotion dysregulation developing (Bemmouna and Weiner, Reference Bemmouna and Weiner2023).
A growing number of studies have explored adapted versions of DBT. These often include adaptions to the five modes of DBT (Bemmouna et al., Reference Bemmouna, Coutelle, Weibel and Weiner2022; Huntjens et al., Reference Huntjens, Bosch, Sizoo, Kerkhof, Smit and van der Gaag2024) or to the skills-training component only (Hartmann et al., n.d.; Lee and Arora, Reference Lee and Arora2023; Ritschel et al., Reference Ritschel, Guy and Maddox2022) for adult autistic populations. These interventions often included adaptations discussed above (e.g., (Weiner et al., Reference Weiner, Bemmouna, Costache and Martz2025; White et al., Reference White, Conner, Beck and Mazefsky2021), with a particular focus on making mindfulness tasks and instructions more concrete and precise; working on social anxiety before participants joined skills group; integrating sensory profile assessments and adaptations; providing clear scheduling; using specialist interests to increase motivation; providing support for between-session practices to help with executive functioning difficulties; more visual elements when teaching skills; and integrating stimming into self-soothe and emotion regulation (Bemmouna et al., Reference Bemmouna, Coutelle, Weibel and Weiner2022; Hartmann et al., n.d.; Huntjens et al., Reference Huntjens, Bosch, Sizoo, Kerkhof, Smit and van der Gaag2024; Keenan et al., Reference Keenan, Gurba, Mahaffey, Kappenberg and Lerner2023; Lee and Arora, Reference Lee and Arora2023; Ritschel et al., Reference Ritschel, Guy and Maddox2022). These studies suggest promising findings regarding feasibility, acceptability, and changes in self-harm, suicidal behaviours, and emotion regulation difficulties. The one randomised controlled trial to investigate the efficacy of adapted DBT for autistic adults found that suicidal behaviours and depression decreased significantly compared with treatment as usual, although the differences between conditions in suicidal behaviours was no longer statistically significant at the 12-month post-intervention follow-up (Huntjens et al., Reference Huntjens, Bosch, Sizoo, Kerkhof, Smit and van der Gaag2024). No known studies have explored these adaptations in adolescent populations.
Few studies have investigated the outcomes of autistic populations in standard DBT which has not employed systematic adaptations for these groups. One study explored the effectiveness of non-adapted DBT by comparing routinely collected clinical outcomes of a DBT programme for autistic and non-autistic adolescents (Phillips et al., Reference Phillips, Parham, Hunt and Camp2024). This study suggested that autistic adolescents experienced improvements in self-harming behaviours, borderline personality disorder symptoms, emotion regulation, and in-patient bed days by the end of DBT, and that there were no statistically significant differences in these changes compared to their peers without an autism diagnosis. While this study tentatively suggests no significant differences in treatment effectiveness based on clinical outcomes, it does not provide information on the subjective acceptability of the standard DBT programme to autistic adolescents. Qualitative studies exploring autistic adolescents’ experience of standard DBT may offer insight into ways the treatment can be optimised to improve any issues around acceptability, given the reported barriers to accessing psychological interventions (Camm-Crosbie et al., Reference Camm-Crosbie, Bradley, Shaw, Baron-Cohen and Cassidy2019; Dickson et al., Reference Dickson, Lind, Jobin, Kinnear, Lok and Brookman-Frazee2021; Murdoch et al., Reference Murdoch, Cahill and Worrall-Davies2023; Tint and Weiss, Reference Tint and Weiss2018). This would also inform future accommodations and potential adaptations to the model. Therefore, this service evaluation sought to understand the following experiences of autistic adolescents in a national DBT programme for adolescents in the UK:
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(1) What lived experience do autistic adolescents bring with them when accessing DBT, in relation to how they perceive their autism diagnosis and co-occurring mental health difficulties?
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(2) How do autistic adolescents experience different components of DBT (individual sessions, skills groups, telephone coaching), reflecting on strengths and limitations?
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(3) What are the experienced barriers and motivators in accessing or utilising DBT skills in daily life?
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(4) What recommendations do autistic adolescents have on ways to adapt the DBT programme to cater to their needs?
Method
Service context
The National and Specialist Child and Adolescent Mental Health Service (CAMHS) DBT service at South Lnodon and Maudsley NHS Foundation Trust (Camp et al., Reference Camp, Hunt and Smith2023a; Smith et al., Reference Smith, Hunt, Parker, Camp, Stewart and Morris2023) accepts referrals from Tier 3 Community CAMHS and Tier 4 Adolescent In-patient Units/Specialist services at both local and national level. Drawing on evidence-based DBT for adolescents (Rathus and Miller, Reference Rathus and Miller2015), with some adaptations for implementing in the NHS (see Camp et al., Reference Camp, Hunt and Smith2023a for further explanation), the service supports adolescents aged 13–18 years old with pervasive emotion dysregulation, self-harm, suicidal behaviours and associated mental health difficulties. During this study period, the DBT programme included: up to 9 months of weekly individual sessions with adolescents; 21 weekly skills group (lasting around 6 months including breaks between modules) conducted separately for both adolescents and parents/carers; between-session telephone coaching for adolescents to promote generalisation of skills use into daily life; and a weekly team consultation meeting for therapists to enhance motivation, capability and adherence to the treatment manual. Parents/carers were allocated a therapist that acted as parent/carer worker, with whom they could meet for individual session and contact for telephone coaching to promote their own skills practice and support for their child. Joint family sessions and other adjunctive interventions were provided as needed.
This service context provided DBT to autistic and allistic adolescents, and their families/carers, was not specifically adapted for autistic young people. However, therapists to varying degrees would have integrated aspects of diversity into the biosocial model formulation and other aspects of the intervention where deemed appropriate. These accommodations are not systematically implemented. In addition, sensory needs were integrated into the PLEASE skill teaching to consider sensory vulnerabilities to emotions, into the self-soothe skill teaching to consider soothing sensory input across the eight senses, and fidget toys were included in the skills groups to encourage exploration of utilising these as regulation aids in group.
Participant recruitment
Using purposive sampling, we invited adolescents within the service who either had or were in the process of seeking a clinical diagnosis of autism spectrum condition to participate in this qualitative interview study after completing the DBT skills groups (i.e. the first 6 months of treatment). Autism diagnostic information is collected at the point of referral and baseline assessment and does not from part of the inclusion/exclusion criteria for the young person to access DBT care within the team. This was to ensure that all adolescents had attended the majority of their DBT treatment to provide reflections across all components of DBT offered within the service. Ten of the 12 invited adolescents completed the interviews (see Table 1 for demographic and symptom information as noted on clinical records), and two adolescents chose to withdraw from the study before participating in the interview due to time constraints. Nine of the 10 adolescents had confirmed clinical diagnosis of autism. One adolescent was on the waiting list and seeking autism diagnosis at the time of participating in the study, and self-identified as autistic.
Table 1. Adolescent demographic information at baseline (N=10)
All demographic information and measures were collected at assessment, before treatment began. SCID-II, Structure Clinical Interview for DSM-IV Axis II Personality Disorders (scores ≥5 meet the diagnostic criteria for borderline personality disorder or emotionally unstable personality disorder); SCARED, Screen for Child Anxiety Related Disorders (scores ≥25 may indicate the presence of an anxiety disorder, and scores ≥30 are more specific); MFQ-C, Mood and Feelings Questionnaire-Child (higher scores out of 66 indicate more depressive symptoms, scores ≥27 may indicate the presence of depression); DERS, Difficulties in Emotion Regulation Scale (higher scores out of 180 suggest greater problems with emotion regulation). a n=9.
Materials
Interview topic guide
The first author developed the interview topic guide (see Appendix 1 in the Supplementary material) to gain insight into autistic adolescents’ experiences of receiving DBT, and the topic guide was reviewed with the first participant in the study to ensure that the questions were easy to understand and acceptable to autistic adolescents. We were interested first in how autistic adolescents understood autism and perceived their own diagnosis, such as how adolescents would describe navigating their own identity in relation to autism. We asked adolescents to reflect on all different aspects of DBT, including individual therapy, skills group, telephone coaching, and their overall experience of being able to discuss autism during DBT.
Measures
All participants completed the Structured Clinical Interview for DSM-V Axis II Personality Disorders, borderline personality disorder (BPD) subscale at initial assessment to examine traits related to BPD, and the Screen for Child Anxiety Related Disorders to assess anxiety symptoms; the Mood and Feelings Questionnaire-Child version to assess depression symptoms; and the Difficulties with Emotion Regulation Scale to assess emotion dysregulation (see Appendix 2 in the Supplementary material for more details on each measure).
Procedure
All adolescents received an information sheet that explained the aims and procedures of the study and provided informed consent prior to taking part in the interview. All interviews were conducted via Microsoft Teams video call between January 2023 and January 2024. During each interview, the interviewer took field notes to facilitate question scaffolding, and all video recordings were transcribed. Interviews lasted 30–45 minutes, and adolescents received a £15 gift voucher upon completion. The first and second authors participated in data collection. One interviewer (J.L.) was a female psychology trainee clinician in the team with extensive experience of conducting qualitative research with autistic adolescents at the doctorate level and supervised the second interviewer (A.S.) who was a female assistant psychologist with a bachelor’s degree in psychology also with experience of conducting qualitative research at the undergraduate level. Neither of the two interviewers identified as being neurodivergent, although one interviewer (J.L.) has worked extensively with autistic children and adolescents in both clinical and research capacity for 9 years. To ensure the adolescents were familiar with the interviewers but did not have potential competing interests that may inhibit their ability to share their opinions, we ensured that interviewers may know adolescents from DBT skills groups through group facilitator role but were not the young person’s individual DBT therapist. Both interviewers participated in data analysis. All transcripts were checked by both interviewers to ensure accuracy, and no repeat interviews took place. We considered ways to ensure accurate representation of autistic adolescents’ views during feedback to the wider clinical team (none of whom identified as neurodivergent), and we decided to code primarily the explicit surface meanings (i.e. semantic features) of the interview data to avoid misinterpreting underlying assumptions of meanings (i.e. latent features) of the data.
Analysis
Following the Braun and Clarke (Reference Braun and Clarke2006, Reference Braun and Clarke2013) method to complete reflexive thematic analysis, we (the first and second authors) primarily coded the semantic features of the interview data. We first familiarised ourselves with the data through transcribing, reading and re-reading the transcripts. Throughout the analysis, we aimed to centre the discussion on participants’ lived experiences and understand their perspective on DBT without superimposing any existing frameworks on their responses. At the same time, as researchers, we adopted a critical realist stance (Fletcher, Reference Fletcher2017) and evaluated whether autistic adolescents’ perceptions of when and how autism was brought into conversation and informed DBT adaptations (‘experiential’ sphere) may have influenced their own experience of accessing and engaging with different components of DBT (‘actual’ sphere), and in turn related to the Social Model of Disability (Chown et al., Reference Chown, Robinson, Beardon, Downing, Hughes, Leatherland, Fox, Hickman and MacGregor2017) where disability is a function of poor adjustments and adaptations that are not meeting individual differences and their unique needs (‘real’ sphere).
Using NVivo version 14, we went through three iterative rounds of independent coding of three to four transcripts each time and met to discuss our interpretations of the transcript that led to our coding of the data. Rather than assessing inter-rater reliability, we examined similarities and differences in our codes and reflected on our own position and interpretation of the transcripts in relation to our own professional experiences of supporting autistic adolescents, to allow both authors’ perspectives to be reflected in the final reporting of results through theme generation. The first author approached the study as clinician-researcher with experience working with neurodivergent adolescents in DBT. Together with the research team, we were able to draw on our understanding and experience of delivering DBT in different capacities to hypothesise how different therapy components may have presented unique strengths and challenges when meeting the needs of autistic youths. We were able to shape follow-up questions and direct the interview towards eliciting helpful recommendations from the participants on ways that DBT can be made more accessible and beneficial for other autistic adolescents. We approached the interview with a neuro-affirmative approach by clearly stating how each autistic adolescent’s opinions can bring about meaningful change and evoke reflections within the clinical team to enhance our ability to best support neurodivergent youths.
After iterative rounds of reviewing each transcript together and discussing codes, we reached agreement on the final set of themes and subthemes. As suggested by Braun and Clarke (Reference Braun and Clarke2021), we did not use data saturation as an indicator for when to stop data analysis. Instead, as part of reflexive thematic analysis, we viewed coding as a process that continuously evolved and developed through discussions between the two coders, and were not derived from a fixed framework (Braun and Clarke, Reference Braun and Clarke2021). To gauge clinicians’ understanding, interpretation and feedback on key themes identified from the data, preliminary study findings were presented at the Society for DBT in the UK and Ireland 2024 Conference. Questions and feedback from the diverse audience at the conference highlighted that the final themes need to explicitly state direct clinical implications on meaningful adaptations of DBT to cater for the needs of autistic adolescents and clearly outline ways to strengthen neuro-affirmative practice in DBT when supporting autistic adolescents. The last author also supported in reviewing and providing feedback on theme structure, boundaries, and clarity to ensure that clear clinical implications can be drawn out from described themes. We report the full qualitative procedure using the COREQ Checklist (Tong et al., Reference Tong, Sainsbury and Craig2007) in Appendix 3 of the Supplementary material.
Results
Adolescents’ demographic information is provided in Table 1. We summarise the overall thematic structure in Table 2. To maximise clarity in highlighting how feedback from adolescents can inform clinical practice across different components of DBT, we divide our analysis to specifically address each of the four questions stated in our service evaluation aims, which reflect: (1) understanding autistic adolescents’ lived experiences; (2) understanding autistic adolescents’ experience of accessing different components of DBT; (3) broader considerations for DBT skills use; and (4) general feedback on meaningful adaptations. We discuss the key themes within each section using narrative synthesis and illustrative quotes that are summarised in Table 2.
Table 2. Summary of themes and subthemes including quotes from adolescents (n=10)
Question 1: What lived experiences do autistic adolescents bring with them when accessing DBT?
Autistic adolescents reflected on how they navigated their autism diagnosis in relation to personal identity, recognising strengths and differences that stem from autism, and their understanding of how autism may influence their experience of co-occurring mental health difficulties. We summarise these experiences into four main themes (Table 2a).
Theme 1: The Impact of Invalidation
First, autistic young people spoke about the experience of chronic invalidation from their environment, where people may have either dismissed, misunderstood, or conveyed ableist views such as ‘ohh, you don’t seem that autistic’ (B2) when speaking to autistic adolescents about their diagnosis. The diagnostic overshadowing of autism and neurodiversity by other conditions such as anxiety and low mood meant that many autistic young people experienced missed or late diagnosis and did not receive the support they needed in a timely fashion or may have received little input about what autism means post-diagnosis. Young people also spoke about the impact of internalising chronic invalidation from others. Adolescents spoke about how being told by many others that they do not have autism made it harder for them to recognise those traits in themselves and actively pursue a diagnosis. Even when a diagnosis has been confirmed, autistic adolescents spoke about the ambivalence and mixed feelings regarding whether they viewed autism to be part of their identity, and the impact of having an on/off relationship with their diagnosis on their ability to accept themselves fully for their individual differences. Autistic adolescents also talked about the impact of this self-invalidation on feeling like they must mask and hide their differences in social settings.
Theme 2: Fostering Acceptance and Understanding
First, autistic adolescents described that receiving an autism diagnosis was often the beginning of feeling understood and validated by others, as the diagnosis offered a lens for them to reflect and make sense of their past lived experiences in the context of neurodivergence, especially negative social interactions with peers as well as sensory differences and meltdowns. Autistic adolescents also talked about the importance of embracing neurodivergence as a form of individual difference and forms an important part of who they are in everyday life. Autistic adolescents felt empowered through the process of diagnosis disclosure to bring about wider systemic change and acceptance. Adolescents spoke about how explaining the diagnosis meant peers, school systems, and even clinical therapists may develop a better understanding of their needs and highlighted that everyone should view it as their personal responsibility to improve autism knowledge and understanding, rather than always having to rely on the autistic young person’s account, as each autistic person may be very different.
Theme 3: What does Autism Mean to Me?
First, autistic adolescents embraced many strengths that they associated with their neurodivergence. For example, viewing the world through a different lens can evoke creativity, and many drew on their lived experiences of social communication differences that allowed them to have more empathy and be more open and honest in their communication with others to avoid misunderstanding. A few adolescents also talked about being able to develop a depth of knowledge for areas of focused interests, be very goal-driven when they put their minds to a task and have detail-oriented processing that helps them to be methodical and observant. Second, autistic adolescents also noted differences associated with autism, such as finding emotion identification, expression, and processing to be more difficult than others, having a range of sensory differences that can limit various aspects of their daily lives, and having stark social communication differences that can make it harder for them to interact with others. Finally, adolescents talked about how the boundary between strengths and differences might be blurred. For example, hyperfocus and learning social cues can both have advantages in developing deeper learning and build empathy with others. At the same time, these can prove to be exhausting at times when over-used. Recognising strengths and differences can be helpful to support the autistic adolescent build a more holistic image of their autism identity.
Theme 4: Autism and Mental Health Difficulties
First, autistic adolescents talked about both recognising the importance of understanding what autism means for them, and felt like the post-diagnostic support they received may not always be adequate and they can be left to navigate their diagnosis alone. Poor understanding of how autism and late diagnosis combined can increase their vulnerability to developing co-occurring mental health difficulties, as well as prolonged diagnostic overshadowing as certain behaviours such as masking may be misattributed to anxiety. Social anxiety was particularly common in this sample and was associated with both intolerance of uncertainty in social situations and not always knowing how to respond. Second, autistic adolescents spoke about how validating it was when autism was both considered as a vulnerability factor, and to have emotion dysregulation identified as the main target for treatment in DBT. Understanding emotion dysregulation and associated self-harm behaviours and urges within the context of autism can be helpful, as one autistic adolescent was able to relate self-harm to sensory overload associated with autism.
Question 2: How do autistic adolescents experience different components of DBT?
Autistic adolescents reflected on each DBT component, which they directly came in contact with, namely individual sessions, skills group, and telephone coaching, to consider how autism was brought into the sessions and influenced accessibility of DBT content in different settings. We highlight the strengths and difficulties experienced by adolescents in each of the different components in DBT (Table 2b).
Theme 1: Individual Sessions
First, given that many adolescents experienced both environmental invalidation and internalised stigma associated with autism in everyday life, adolescents spoke about the when, who, and how conversations about autism were initiated in individual sessions to bring such lived experiences into conversation. For some, conversations emerged naturally as discussions about social situations or emotion dysregulation provided opportunities to consider the role that autistic traits (such as social communication and sensory differences) might play. Others felt that although it was acknowledged, the focus of sessions was around emotion dysregulation and not always related to autism per se. Understanding emotion dysregulation in the context of autism also helped some adolescents better understand why they responded to situations in certain ways, and how autism can increase vulnerability to emotion dysregulation. Second, adolescents talked about mixed experiences of validation or invalidation from therapists when they shared their lived experiences. Some therapists advocated for environmental adaptations to be put in place to accommodate for sensory differences, providing functional validation. Others may have brought in more preconceived notions of how autism might affect someone that came across as invalidating to the adolescent. Nonetheless, having the opportunity to discuss autism facilitated adolescents’ understanding of self and their emotional experiences. Finally, adolescents valued individual sessions to provide opportunities to clarify and practise skills in a person-centred way and consolidate learnings.
Theme 2: Skills Groups
Autistic adolescents described how autistic traits can have a direct impact on how they experienced the social setting of DBT skills groups that have a direct impact on their learning, as well as perceived relevance and application of DBT skills when accounting for their social communication and sensory differences. First, adolescents reported that social communication differences meant that they found it harder to understand implicit social rules in group, which perpetuated and exacerbated social anxiety. For some, having a shared interest or knowing there was another autistic young person in group helped foster social connection. For others, noticing how one’s social communication differences stood out from others made the experience more isolating and anxiety provoking. Second, adolescents talked about the process of sharing lived experiences with others, and the impact on both group dynamics, and oneself. Double empathy difficulties arose where both autistic and non-autistic adolescents may be more likely to misinterpret each other’s perspectives. Autistic adolescents often noticed that they experienced the world differently that meant skills practice did not always work in the same way as it did for non-autistic adolescents, and balancing sharing their perspective without invalidating or demotivating other people can be hard. Autistic adolescents reported feeling upset and needed to call out when group rules were not respected. Noticing visible differences in one’s reactions compared with others (e.g. taking a joke literally and feeling offended when others were laughing) also led adolescents to feeling othered and invalidated by group members. Third, adolescents spoke about how group materials and method of teaching using role-plays often failed to include or highlight neurodivergence, and adolescents did not always feel able to seek clarification for fears of holding back the group and standing out for not understanding the worksheets. General guidance on skills use were less applicable to autistic adolescents’ personal situations, which led to reduced motivation for skills practice outside of group. Fourth, adolescents wanted the role of facilitators to be more hands-on in terms of managing group dynamics, and to maintain a neutral stance when responding to adolescents in the group (e.g. not laugh at jokes as some autistic adolescents may have taken this literally and did not find it funny). Adolescents wanted a second facilitator who actively checked in on each person’s understanding of materials being shared, to give more opportunities for clarification without having to ask questions oneself. Finally, adolescents spoke about the need to consider how the environment may impact on each person’s sensory needs. For example, noisy and smaller spaces can increase one’s vulnerability to experience sensory overwhelm. Even adaptations such as providing fidget toys can be perceived to be helpful by some, and distracting for others. Helping adolescents familiarise themselves with each other and the environment can make the setting feel less intimidating and more accessible for participation.
Theme 3: Telephone Coaching
Overall, autistic adolescents found telephone coaching to be particularly challenging and less used throughout therapy. First, adolescents found the social demands of making a telephone call too inaccessible. The uncertainty of how telephone conversations will unfold is exacerbated by having very minimal social cues to assess the therapist’s reactions, and adolescents reported not knowing how to effectively communicate their situation across. Second, when there was no guarantee that telephone coaching would always be directed to your individual therapist, adolescents talked about feeling exhausted to think they will have to explain their situation to someone new, and what if the new team member misunderstands them and makes them feel worse through invalidation. Third, practical challenges around making telephone calls included forgetting to ring, or only remembering when one is already very dysregulated and no longer able to use the telephone, as well as wanting to use telephone coaching outside of office hours when it was not available. Fourth, in general, many adolescents commented that texting provided a helpful alternative as visual information processing allowed one to communicate more effectively, although others found this awkward and still not knowing how to structure one’s responses so not to sound inappropriate. Finally, adolescents wanted therapists to be more mindful of their environment when taking telephone coaching, as background noise can be distracting and cause sensory overwhelm.
Question 3: What are the barriers and motivators to skills use in everyday life?
Autistic adolescents spoke about the difficulties of generalising skills to everyday life, and also practical tips that increased accessibility to certain skills, sometimes drawing on their autistic strengths. For skills such as mindfulness and emotion regulation, adolescents also talked about how some skills practice felt like masking or hiding how they felt. We summarise their experiences into three key themes (Table 2c).
Theme 1: Barriers to Skills Use
First, adolescents talked about abstract skills that lacked clear instructions made the skill harder to use, especially if one did not understand the rationale behind skills use. Second, understanding the skills did not always translate to generalising skills use to personal everyday situations. Third, individual differences in motivation to practise skills often differed, and sometimes lack of motivation stemmed from having unhelpful pre-conceived misperceptions of skills from previous therapy, which have been taught outside of a formal DBT programme. Fourth, adolescents noted that some skills, such as check the facts, and interpersonal skills like GIVE, often had pre-requisite social communication skills that autistic adolescents found difficult. For example, checking the facts and being able to put oneself into other’s shoes often required perspective taking, which was easier to do with the support of family members or their therapist, but harder to do independently. Some skills such as GIVE also explicitly asked for eye contact, which can be uncomfortable for some autistic adolescents. Finally, adolescents talked about the need to consider sensory difference when teaching and using skills. Although many found distress tolerance skills such as TIPP to be helpful in managing sensory overwhelm, being mindful of individual preferences for sensory components such as temperature, having water on one’s face, and managing such aspects ahead of skills practice can make the skill more accessible for use. Understanding how attentional differences may also form part of neurodivergence that can interfere with mindfulness practise is also important, such that observing external surroundings can contribute towards sensory overwhelm, when the adolescent may be trying to shut off certain cues to better focus one’s attention on the task at hand.
Theme 2: Supporting Skills Use
First, adolescents talked about how having a clear rationale on why a skill can be helpful and working together with their therapist to tailor skills practise based on individual’s needs made it easier for the adolescent to remember and be more willing to practise the skill. Second, adolescents noticed that some skills came with clearer instructions, such as carrying out opposite actions to urges to avoid (Act Opposite) and having structured ways to think through social interactions (e.g. DEAR MAN). Writing a clear Cope Ahead plan and focusing on rehearsing a few skills well also reduced the burden on having to remember which skill to use in difficult situations. Third, adolescents were able to use skills to effectively improve their relationships both with oneself and with peers. For example, using Check the Facts helped autistic adolescents to notice when they are catastrophising, and both self-validate one’s distress, and consider different missing perspectives. Interpersonal effectiveness skills were reported to be particularly helpful for autistic adolescents who drew on them to support other people, sharing their skills when noticing others in distress, and fostering stronger relationships with others. Finally, autistic adolescents talked about how strengths associated with autism, such as hyperfocused attention and logical reasoning, made some skills easier to use than others, such as being able to describe the facts in a rational way (e.g. Mindfulness Describe skill and Check the Facts), and this was noticed by therapists who considered adolescents to be accessing their Wise Mind when they relied more on logical thinking, which may have been more reflective of Reasonable Mind.
Theme 3: Skills Practice or Masking?
First, autistic adolescents found some skills to be less intuitive, mostly around trying not acting in line with one’s emotions (i.e. Act Opposite). One adolescent found switching between different states of mind to be unnatural, and that Wise Mind almost felt like they were trying to put on a persona of being calm when that did not match how they felt. For others, Act Opposite – especially aspects related to monitoring one’s facial expressions and changing one’s body language – felt more like masking and hiding how one felt; whereas taking actions instead of avoiding felt more helpful and brought about noticeable changes in one’s mood. Second, autistic adolescents spoke about how using some discreet skills in public might hide how one’s feeling as to not stand out, and this meant that other people may be less able to identify when they are struggling, and skills contributed to masking one’s difficulties in public. Third, autistic adolescents also noticed that interpersonal effectiveness skills, especially learning to identify one’s own values and upholding them (FAST and Wise Mind Values), and learning to effectively assert oneself without coming across as disrespectful, were really valuable ways to help one become more authentic in one’s social interactions. Learning to put one’s own needs first rather than always focusing on maintaining the relationship when the latter meant masking or disregard for self-respect were also helpful skills as the antithesis of masking.
Question 4: What recommendations do autistic adolescents have on adapting DBT to better suit their needs?
Adolescents also offered recommendations on ways to improve session materials to facilitate learning, as well as general tips on ways to increase accessibility to different treatment components. We review each of the two themes below, and quotes are summarised in Table 2d.
Theme 1: Improving Written Materials
First, adolescents spoke about the importance of using worksheets to provide structure to skills sessions, allowing individuals to work through materials in their own time given differences in information processing speed, and use the written guide to reduce burden on working memory and being easier to relate the skill to personal circumstances through examples. Second, adolescents talked about how sometimes language can be taken quite literally, and facilitators can benefit from paying attention to resources, drawing on adapted neurodiversity-based materials where possible, to reduce misunderstanding. Finally, adolescents wanted to be involved in co-creating resources that were clearer and appealed to them visually, such as re-designing diary cards.
Theme 2: General Accessibility Advice
First, adolescents talked about the importance for mutual understanding about a young person’s individual differences to be established between therapist and young person, and the importance of checking in with the adolescent early on in pre-treatment to ensure adaptations and accommodations can be put in place from the get-go. Second, adolescents noticed several helpful adaptations during their time in DBT, such as allowing clients to bring fidget toys and explicitly stating that eye contact is not mandatory, finding much quieter spaces over lunch for autistic adolescents to socialise in, having flexible session lengths that accommodates for learning differences, and having clear session agendas. Third, adaptations around managing anxiety (especially in social settings) can also help increase engagement, such as prioritising rapport building during pre-treatment with therapist, providing more anonymised ways for question asking during group to reduce attention drawn to oneself, and offering a range of meeting modalities to suit the adolescent’s preferences for accessing therapy.
Discussion
This study aimed to evaluate autistic adolescents’ experiences of accessing DBT within a National and Specialist Child and Adolescent Mental Health DBT service in the UK. Unlike previous studies with autistic adults and adolescents that often involved an abridged or adapted version of DBT being delivered in a shorter time frame, all adolescents in the current study received the full adolescent DBT programme (Rathus and Miller, Reference Rathus and Miller2015) over the course of up to 9 months, in a routine clinical service rather than part of a clinical trial. The findings from this study largely resonate with previous studies that evaluated feasibility and acceptability of DBT in autistic adults and related adaptations (Bemmouna et al., Reference Bemmouna, Coutelle, Weibel and Weiner2022; Bemmouna et al., Reference Bemmouna, Lagzouli and Weiner2023; Bemmouna and Weiner, Reference Bemmouna and Weiner2023; Huntjens et al., Reference Huntjens, van den Bosch, Sizoo, Kerkhof, Huibers and van der Gaag2020; Keenan et al., Reference Keenan, Gurba, Mahaffey, Kappenberg and Lerner2023). We begin by summarising autistic adolescents’ lived experiences prior to entering DBT to consider the interplay between external and internal invalidation on emotion dysregulation, before contextualising adolescents’ experiences of accessing different components of DBT and recommendations for adaptation (summarised in Table 2d) considering current literature.
For many autistic adolescents, the long road to receiving an autism diagnosis was riddled with invalidation experiences stemming both from professionals, such as diagnostic overshadowing, and from family and wider society that often hold ableist views (Wilson et al., Reference Wilson, Thompson, Rowse and Freeth2023). The subsequent internalisation of ableism and having a mixed relationship with accepting one’s own diagnosis meant that many autistic adolescents had mixed levels of understanding of what autism meant for them. Nonetheless, most adolescents were able to name several differences and strengths that summarised how autism impacted their everyday life, and having an important understanding of one’s own needs enabled adolescents to engage in conversations around vulnerabilities associated with emotion dysregulation and co-occurring mental health difficulties. Autistic adolescents’ experiences resonated with the biosocial model of emotion dysregulation outlined by Linehan (Reference Linehan1993) and adapted by Bemmouna and Weiner (Reference Bemmouna and Weiner2023). Participants noted the importance of including autism in the biosocial model as important context for their experienced invalidation and potential vulnerabilities to developing emotion dysregulation. A dialectic emerged in that many autistic adolescents found having the opportunity to explore and understand the reciprocal relationship between autism-related vulnerabilities and co-occurring mental health difficulties such as social anxiety to be helpful, and at the same time were clear that they viewed emotion dysregulation to be the main difficulty that needed intervention and should not be overshadowed by their autism diagnosis (Mazefsky and White, Reference Mazefsky and White2014). For this reason, participants highlighted several useful skills and therapy content for decreasing difficulties with emotion dysregulation, and particularly with developing interpersonal effectiveness skills.
The interaction between autistic traits and emotion dysregulation has been explored in literature (Dell’Osso et al., Reference Dell’Osso, Massoni, Battaglini, De Felice, Nardi, Amatori, Cremone and Carpita2023), where emotion dysregulation can negatively impact social functioning; exacerbate intolerance of uncertainty in relation to anxiety and depression; and is also in turn impacted by co-occurring alexithymia, cognitive inflexibility, and rumination. Although previous studies have highlighted the importance of considering alexithymia in relation to emotion dysregulation especially for autistic individuals (Bemmouna et al., Reference Bemmouna, Coutelle, Weibel and Weiner2022; Bemmouna et al., Reference Bemmouna, Lagzouli and Weiner2023; Bemmouna and Weiner, Reference Bemmouna and Weiner2023; Dell’Osso et al., Reference Dell’Osso, Massoni, Battaglini, De Felice, Nardi, Amatori, Cremone and Carpita2023), interestingly, autistic adolescents in the current study did not refer to alexithymia per se in relation to either autism or emotion dysregulation. This may reflect the absence of psychoeducation and explicit assessment and discussions of how alexithymia may impact on emotion regulation processes with autistic adolescents within the service. It may also be that differences in emotion awareness capabilities did not feel particularly pertinent to how these autistic adolescents experienced DBT. Many spoke about the influence of sensory overload as a key contributor to emotion dysregulation, and the importance of including autism as a multi-faceted vulnerability factor during behavioural chain analysis for understanding self-harm and other high-risk behaviours.
Autistic adolescents’ experiences of different components of DBT resonated with previous findings from adult studies. Examples include: using individual therapy sessions to have in-depth personalised skills practice (Bemmouna et al., Reference Bemmouna, Coutelle, Weibel and Weiner2022), the importance of managing social dynamics within skills group to reduce social anxiety as well as environmental adjustments to meet individual differences in sensory needs (Bemmouna et al., Reference Bemmouna, Coutelle, Weibel and Weiner2022; Ritschel et al., Reference Ritschel, Guy and Maddox2022), and drawing on concrete explanations to encourage skills practice (Bemmouna et al., Reference Bemmouna, Coutelle, Weibel and Weiner2022; Keenan et al., Reference Keenan, Gurba, Mahaffey, Kappenberg and Lerner2023; Ritschel et al., Reference Ritschel, Guy and Maddox2022). Social anxiety and intolerance of uncertainty were frequently cited as barriers to accessing skills group and telephone coaching, and autistic adolescents noted that having clearer agendas and structured conversations can reduce some uncertainty to ease anxiety, a benefit that may be generalised to all adolescents accessing treatment. Given that adolescence marks a period of heightened sensitivity to peer rejection (Blakemore and Robbins, Reference Blakemore and Robbins2012; Foulkes and Blakemore, Reference Foulkes and Blakemore2018) and that many autistic individuals may experience prolonged and persistent invalidation from others, it was important to see from autistic adolescents’ perspective how skills group provided a microcosm that had unique boundaries and set-up that can be particularly anxiety provoking.
Autistic adolescents experienced a double bind where often being one of the only neurodivergent individuals in group, they felt both ‘othered’ when they struggled to relate to shared experiences of social chit-chat and skills use amongst other group members, and invalidated when their unique perspectives may be misunderstood by others. The latter resonates with the Double Empathy problem (Milton, Reference Milton2012; Milton et al., Reference Milton, Heasman, Sheppard and Volkmar2018; Milton et al., Reference Milton, Gurbuz and López2022), where the communication may break down across neurotypes when both parties struggle to see things from the other’s perspective. This was especially evident in the current service evaluation project which was conducted in a routine clinical care setting, and autistic adolescents accessed clinical care in the same service as non-autistic adolescents, which is reflective of most clinical services outside of autism specialist settings. Potential fear of negative evaluation from others can maintain social anxiety over time, as autistic adolescents may continue to monitor both oneself and others to try and come across well in groups (Clark and Wells, Reference Clark, Wells, Heimberg, Liebowitz, Hope and Schneier1995), which may also overlap with masking one’s autistic traits and not drawing attention to oneself (Lei et al., Reference Lei, Leigh, Charman, Russell and Hollocks2023). Having group facilitators that actively scaffold conversations around how individual differences, including neurodivergence, may affect skills practice might offer a neutral space for sharing individual perspectives without singling anyone out based on their minoritised status (Camp et al., Reference Camp, Morris, Wilde, Smith and Rimes2023b; Lei et al., Reference Lei, Watkins-Muleba, Sobogun, Dixey, Bagnall and Camp2024b). If possible, having the second facilitator to actively check in on each adolescent to answer questions may also bypass the burden of having to share in the wider group, and reduce the impact of social anxiety on access to skills learning in a group setting. On the other side of the dialectic, where autistic adolescents were aware of other autistic adolescents in skills group, this was seen as beneficial for increasing connection with similar others, similar to findings from the experiences of other minoritised groups in DBT (Camp et al., Reference Camp, Morris, Wilde, Smith and Rimes2023b; Lei et al., Reference Lei, Watkins-Muleba, Sobogun, Dixey, Bagnall and Camp2024b), and also findings on the benefit of within-neurotype social interactions to foster peer relationships for autistic adolescents (Chen et al., Reference Chen, Senande, Thorsen and Patten2021).
Finally, adolescents provided additional recommendations to DBT adaptations that are outlined in Table 2d. Many of these resonate with prior adaptations outlined in DBT such as using visual materials, making teaching more concrete, accounting for individuals’ differences in information processing speed, practical adjustments to session lengths and breaks, personalisation of therapy materials, building routine and minimising uncertainty to manage anxiety, preparatory work to reduce social anxiety related to skills group, and environmental accommodations to suit individual differences in sensory needs (Bemmouna et al., Reference Bemmouna, Coutelle, Weibel and Weiner2022; Hartmann et al., Reference Hartmann, Urbano, Raffaele, Kreiser, Williams, Qualls and Elkins2019; Huntjens et al., Reference Huntjens, van den Bosch, Sizoo, Kerkhof, Huibers and van der Gaag2020; Keenan et al., Reference Keenan, Gurba, Mahaffey, Kappenberg and Lerner2023; Ritschel et al., Reference Ritschel, Guy and Maddox2022). Autistic adolescents were especially mindful that their voices do not represent the lived experiences of everyone, and the key is for therapists to explore with each autistic client their individual preferences, strengths and differences, and make accommodations from the get-go to ensure the autistic adolescent feels safe and comfortable to engage in treatment over time. This is congruent with the principle-driven nature of DBT. Adolescents highlighted that continued conversation about adjustments and accommodations throughout DBT is key, as individuals may develop a better understanding of their autism and related needs over time. Such conversations were experienced as validating and the actual implementation of accommodations as functionally validating, which may serve to reduce the impact of the invalidation they have received from their environment (Bemmouna et al., Reference Bemmouna, Lagzouli and Weiner2023). Additionally, participants often cited barriers to seeking clarification on content or having the potential to misinterpret abstract information, therefore therapists likely need to check in on their understanding in all modes of DBT to appropriately scaffold capability development. This requires therapists to balance delivering DBT with fidelity, while shaping the principles to fit the needs of the clients, effectively to help clients work towards their life-worth-living goals.
Strengths and limitations
A strength of the current study is that it reflects feedback from autistic adolescents receiving a comprehensive DBT programme offered through a CAMHS in the UK, rather than participants in a clinical trial that may be specifically adapted for autistic individuals (Bemmouna et al., Reference Bemmouna, Coutelle, Weibel and Weiner2022; Huntjens et al., Reference Huntjens, van den Bosch, Sizoo, Kerkhof, Huibers and van der Gaag2020; Ritschel et al., Reference Ritschel, Guy and Maddox2022). The findings from the current study may therefore be more relatable to the experiences of autistic young people accessing routine care in child and adolescent mental health settings outside of autism specialist clinics.
Limitations of the current study are also related to the non-autism specialist nature of the included DBT service. For example, due to restraints on service resources, we were not able to complete formal assessments of individual sensory profiles as recommended by Bemmouna and colleagues (Reference Bemmouna, Coutelle, Weibel and Weiner2022) that would have been beneficial to understand sensory needs from the get-go. Similarly, unlike weekly consultations and supervision that took place to monitor DBT adherence to fidelity, conversations around autism and its overlap with emotion dysregulation both at assessment and throughout the intervention was not standardised across team members, and individual differences in adolescents’ accounts may reflect different therapists’ understanding of neurodiversity and approach to adopting a neuro-affirmative practice within the team. Additionally, any accommodations made in the DBT programme were not systematically monitored or recorded. It is also important to state that although an autistic adolescent helped the first author evaluate and pilot the interview questions, and that the first author has around 10 years of experience in working with autistic children and adolescents in clinical, research, and community settings, none of the authors or team members identified as autistic, and were unable to offer a first-hand insight into neurodivergent perspectives. Although it was not within the scope of the current service evaluation project due to time and resource restraints, we acknowledge that having the opportunity to work more closely with autistic young people throughout the conceptualisation of DBT evaluation to data analysis and interpretation could have strengthened the current paper, and adopting a participatory framework may have addressed power imbalances that may have been present in the current study (Beck and Naz, Reference Beck and Naz2019; Jennings et al., Reference Jennings, Slade, Bates, Munday and Toney2018).
Clinical implications and future directions
In our study, we highlight both adolescents’ lived experiences of their diagnostic journey and what autism means to them in relation to mental health difficulties, as well as reflecting on their experience of accessing a comprehensive DBT programme. We hope such insights and recommendations summarised in Table 2d and throughout the paper can inform therapists to consider ways of improving their neuro-affirmative practice from assessment and formulation stage, first recognising the importance of striking a balance between acknowledging, understanding, and validating each autistic young person’s unique profile of autism-related strengths and difficulties, while also not falling into diagnostic overshadowing and emphasising the role that autism plays when working on emotion dysregulation if this does not resonate with the autistic adolescent’s lived experience. This may include collaboratively considering the role of autism-related differences in the dialectical biosocial model and in behavioural chain and solution analyses, to understand vulnerabilities and consider accommodations in skill implementation.
The importance for therapists to have a good understanding of autism and related characteristics and how they may influence emotion dysregulation may serve as a guide that pre-empt areas for exploration together with autistic adolescents to formulate and chain their difficult experiences while accounting for context. Dialectically, this is to be balanced with self-education so that therapists do not over-rely on minoritised individuals to educate them about their minoritisation, similar to recommendations for other minoritised groups in DBT (Camp et al., Reference Camp, Morris, Wilde, Smith and Rimes2023b; Lei et al., Reference Lei, Watkins-Muleba, Sobogun, Dixey, Bagnall and Camp2024b). Utilising such a guide with clinical sensitivity and flexibility will ensure that each autistic adolescent’s personal experiences is met with validation, to reduce the impact of the invalidating environment (Bemmouna et al., Reference Bemmouna, Lagzouli and Weiner2023). Therapists need to factor in how an autistic adolescent’s personal relationship with their autism diagnosis and identity may also play a role on their willingness to explore such areas openly in DBT. Considering strengths and differences and discussing autism in relation to their experience were reported by the participants as ways that DBT could be used for this goal. It is important for therapists to also improve competency on how to engage in conversations with autistic adolescents related to autistic identity, social camouflaging, autistic strengths and differences and navigating the relationship between autism diagnosis and one’s co-occurring mental health difficulties (Lei et al., Reference Lei, Cooper and Hollocks2024a; Lei and Nocon, Reference Lei and Nocon2024).
In addition, the participants name several accommodations that can be made to the delivery of DBT while adhering to the original principles, which are highlighted in other literature (Bemmouna et al., Reference Bemmouna, Coutelle, Weibel and Weiner2022; Hartmann et al., Reference Hartmann, Urbano, Raffaele, Kreiser, Williams, Qualls and Elkins2019; Huntjens et al., Reference Huntjens, van den Bosch, Sizoo, Kerkhof, Huibers and van der Gaag2020; Keenan et al., Reference Keenan, Gurba, Mahaffey, Kappenberg and Lerner2023; Ritschel et al., Reference Ritschel, Guy and Maddox2022), and are likely useful to implement in DBT programmes supporting autistic people. These include, but are not limited to, concrete instruction/explanations, sensory accommodations, additional support for social anxiety, increased structure and clarity ahead of time in all modes of DBT, including neurodivergence in teaching examples, personalising therapy materials, scaffolding generalisation, and the use of visual information to aid teaching. Noticing no one size fits all, we emphasise the need for therapists to embody cultural humility and curiosity to explore with each autistic client how to best tailor DBT to suit their unique needs, tapping into their personal strengths, and support autistic individuals to better understand their emotion dysregulation and lived experiences in the context of autism, to champion neuro-affirmative practice and foster positive autism identity where possible. It is additionally pertinent for therapists to be aware of their allistic biases and seek to reduce the potential for unintentionally oppressing diversity related to autism when teaching skills and concepts which were originally developed within societal contexts that privileges allistic behaviour. Thus, to not reinforce oppressive practice and invalidation of diversity.
Key practice points
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(1) We highlight autistic adolescents’ voices in accessing a comprehensive DBT programme in a non-autism specialist Child and Adolescent Mental Health service in the UK, drawing attention to individual differences in their relationship when navigating autism diagnosis, and personal reflections across different components of DBT to share recommendations for intervention accommodations.
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(2) Adolescents suggested several recommendations for making DBT accommodations, including using concrete language, checking understanding and providing clear rationale for skills practice, using diverse and neuro-affirmative examples, offer time and space for individualised practice to support skills use generalisation, social anxiety preparation work to facilitate skills group attendance, and environmental considerations to accommodate individual sensory differences.
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(3) We emphasise the need for clinicians to embody cultural humility, curiosity, validation, and flexibility when building up personal competencies in neuro-affirmative practice to support autistic individuals within the social model of disability.
Supplementary material
To view supplementary material for this article, please visit https://doi.org/10.1017/S1754470X25100305
Data availability statement
Please contact Dr Jake Camp for data access requests.
Acknowledgements
The authors thank all the adolescents who inspired and participated in this research, Dr Phoebe Wheeler who supported the initial project set-up, Dr Elodie Eisenberg who supported drafting of the abstract, and Helen Wilde for her review of the final manuscript draft.
Author contributions
Jiedi Lei: Conceptualization (lead), Data curation (equal), Formal analysis (lead), Funding acquisition (equal), Investigation (lead), Methodology (lead), Project administration (lead), Supervision (lead), Validation (lead), Visualization (lead), Writing - original draft (lead), Writing - review & editing (lead); Abigail Sanders: Data curation (equal), Formal analysis (supporting), Investigation (supporting), Methodology (supporting), Project administration (equal), Writing - original draft (supporting), Writing - review & editing (supporting); Jake Camp: Conceptualization (supporting), Methodology (supporting), Project administration (supporting), Writing - original draft (equal), Writing - review & editing (equal).
Financial support
This study was funded by research budget within the national DBT team.
Competing interests
Jake Camp is an Associate Editor of the Cognitive Behaviour Therapist. They were not involved in the review or editorial process for this paper, on which they are listed as an author. Jake Camp also provides and receives payment for training in DBT. The other authors have no competing interests to declare.
Ethical standards
This is a service evaluation project with the primary aim of improving service care quality. Ethical approval for this project (as determined by the NHS Health Research Authority Descision Tool) was provided by the South London and Maudsley NHS CAMHS Clinical Governance Committee. All procedures in the study were in accordance with the ethical standards of the institution and the 1964 Helsinki declaration and its later amendments. All authors have abided by the Ethical Principles of Psychologists and Code of Conduct as set out by the BABCP and BPS.
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